For an account of life with AMN and the use of immunokine (cobra venom) please see http://www.aldlife.org/ald_diaries_experience.php?id=62

HELP AVAILABLE

The following information was forwarded by Mark Bostock:

I was diagnosed with AMN several years ago and have found that a great deal of help is out there but not necessarily at your fingertips.  I am not an authority on any of these sources of help, in particular the benefits, but hope that I have provided a few 'pointers' to assist you in benefiting from all the help (financial or otherwise) which is available.

I have picked on a few which I feel are significant and/or have helped me.

I would strongly urge you to use the internet where there are lots of web sites designed to help not just in terms of information on the condition itself but citizens advice functions which provide useful telephone numbers and web site addresses.

Disabled Living Centres

A Disabled (or Independent) Living Centre (DLC) is a place where you can get free and ethical information and advice about products which can increase disabled or older people's choices about how they live. At a DLC you can see and try out products and explore other solutions. Centres provide free information to people in person, by telephone, letter or email.  They are also a good source of information in terms of internet facilities and magazines for example.  They facilitate roadshows and sometimes can carry out driving assessments. 

Disabled Living Centres Council – 0161 8341044

www.dlcc.co.uk

Disability Living Allowance

The is a benefit provided to those under the age of 65 with a long term health problem which affects your everyday activities.  It is not means tested and not affected by any other benefits.  It is split into mobility and personal care and each is assessed separately with a different rate of allowance for each.

There is a lengthy form to complete followed by a doctor’s visit to your house.  The amount awarded can be up to several hundred pounds paid four weekly.  It is tax free.

Motability Scheme

This is a means of purchasing a brand new car without the worry of servicing, tax, insurance etc.  Applications can be processed through accredited dealerships and basically once approved, the car is paid for using your Disabled Living Allowance (higher rate of mobility care).  You can make additional contributions but must receive the higher rate of DLA.  A range of powered wheelchairs and scooters are also available through the Motability Scheme through `route2mobility` on 01264 38480.

www.motability.co.uk    or 01279 635666

Disabled (parking) Badge

This allows you to park almost anywhere inc double yellow lines and free where there is sometimes a charge to be applied such as 'pay and display' parking.  London rules can vary and there are areas where you cannot park at all but a huge benefit to those with mobility requirements.  There is a form to complete followed by a letter from your doctor.

Miscellaneous

There are other benefits connected with housing, work, dependency on others (Carer’s Allowance) etc some of which can mean higher premiums if you qualify for DLA.  Furthermore, the council will assist in removing your bin to save you taking it to the roadside if it is difficult.

Please use the internet, contact your council, use leaflets at medical centres, visit Disabled Living Centres etc to make sure you receive all that is available.

Physiotherapy

There is a wide variety of assistance available outside of the usual walking stick and wheelchair.  There are aids which fall between a walking stick and a wheelchair while wheelchairs can vary from a traditional style to electronic versions to 'sporty' style chairs and desk versions which allow you to move around the office.  Additionally there is an expanding market into 'scooters'.  These start at £1000 although there is a second hand market.  They are excellent 'vehicles' which can be folded easily in to the boot of the car.  There are also devices which fit into your shoes to physically prevent your feet/ankles from 'flopping'.